I have had the pleasure of meeting and collaborating with some amazing people, including the crew at the Spondylitis Association of America.
Although there isn’t an official chapter of the Spondylitis Association of America (SAA) here in Oregon, they do have a strong website and use social media (especially Twitter and Facebook) to connect with patients all over the country. There is a support group listed on their website for our area, but if you can’t make it to Vancouver, WA where they are held, I encourage you to check out their website for all of their great resources and supportive options.
I hadn’t heard of AS until a friend of mine was finally diagnosed. For years, she would talk about her symptoms and levels of pain that was just heart-breaking to listen to, leaving me helpless in giving her answers to the questions she so desperately sought from me. Since then, I have learned a great deal from directly and through the SAA website. My friend has also taken advantage of all they offer, has been able to develop better relationships with new doctors, continues to work full-time and is considering taking part in their PEER Mentor program as a “Mentee”. She’s been officially diagnosed with AS for five years now and has come a long way, in spite of her continuing levels of constant pain. The sense in knowing more about what is going on in her body and learning key tools in managing her symptoms have brought her to a stronger sense of personal determination and, well, hope. That is the theme for the SAA and this celebration today.
The words Ankylosing (“fusion”) and Spondylitis (“inflammation”) may be difficult to pronounce for some and you will often hear people refer to this disease as “Spondylitis” or just “AS”. Straight from their website, the SAA describes AS as:
“Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture.”
Other common symptoms include pain, stiffness and inflammation. Organs may also be affected such as the lungs or eyes, and, rarely, even the heart. You can find more information about how AS may affect a person by visiting their complications link . There is no known cure (yet), but options to aid in managing pain and inflammation are available.
Take time to read the SAA website and check in on the Hope and Apples stories website (and take part on the chat via Twitter #worldasdaychat), you will recognize many tales of challenge and encouragement. Lupus and AS, or other illnesses, have more in common than different. There is one particular entry from Christina McDaniel, who shares her story, video and blog links, as well as some beautiful artwork. I think many of us can relate to her image, even though we may not live with AS. There are many voices to be heard today, however, so be sure to visit them all.
Learn more about these inspiring individuals and, if your life is also touched by AS, definitely consider the SAA as a valuable resource.